Cancer survivors may seek unneeded tests for reassurance

Many people who survive cancer fear recurrence after their treatment ends, according to a study that suggests these concerns may lead to unnecessary tests.

Data from 12 previously published studies involving 849 patients show that after completing treatment, patients want as many follow-up exams and tests as possible to reassure them that tumors have not returned, researchers found.

"Patients want intensive follow-up which comprises a lot of testing," said senior study author Geertruida de Bock, of the University of Groningen in the Netherlands.

"Though this is understandable, it is not desirable since care for cancer is already under pressure due to rising numbers of survivors," de Bock said by email.

Worldwide, an estimated 33 million people are cancer survivors. Their ranks are expected to grow due to rising cancer rates in an aging population as well as improved survival odds with advances in diagnosis and treatment.

As cancer increasingly becomes a chronic disease instead of a death sentence, doctors and patients are struggling to strike the right balance between doing enough follow-up tests to catch any new tumors quickly and avoiding too many needless tests that can lead to unnecessary interventions that don't help people live longer.

Cancer survivors typically get care focused on monitoring for the return of tumors or the development of malignancies in other parts of the body. This can include invasive tests like biopsies as well as expensive imaging like positron emission tomographic (PET) scanning.

Guidelines for follow-up tests depend on many factors including the type of cancer, how advanced it was when it was first detected and treated, and individual patient characteristics like age and other health problems.

While the current analysis didn't examine the outcomes of giving cancer survivors too many or too few tests, it offers fresh evidence that patients may often want more testing than doctors should do based on current treatment guidelines.

For example, some patients said the process of getting more tests and waiting for the results made them anxious, but some patients also said they wanted to continue with a lifetime of extensive follow-up testing.

Patients often said they had lost confidence in their body and feared recurrence so much that they requested screenings that they understood might not be needed. They also expressed a desire for mental health care and psychological support.

The study wasn't a controlled experiment designed to test how or if patients' preferences about follow-up care influence treatment for cancer survivors.

Even so, the findings suggest that doctors and patients may need to have more-frank conversations about how follow-up tests can help and when extensive testing may do more harm than good.

Patients should understand how many recurrent cancers are typically detected with a specific test and how often they might get what's known as a false-positive result, when the test result suggests that tumors have returned even though that's not the case, de Bock said. False negatives, when people with new tumors think they're cancer-free, are also possible.

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"Intensive surveillance can lead to false-positive results and to unnecessary tests and potentially harmful biopsies of suspicious lesions seen on body imaging," said Dr. Carlos Barcenas, of the University of Texas MD Anderson Cancer Center in Houston. "In addition, a false-negative result of a test may also give a false reassurance to a patient."

"Patients and doctors should clearly discuss the surveillance plan after active treatments have finished and clarify expectations," said Barcenas, who wasn't involved in the study.